To recap, I went to this eye appointment because Dr. Boeckman (my regular Optometrist in Conroe) and Dr. McGovern (my Neurosurgeon at MD Anderson) both referred me. They thought it would be a good idea because I have double vision, which has gotten progressively worse over the past several years. I wear glasses with prism to counterbalance the double vision. (I also have progressive lenses to help with reading, but that’s not abnormal for a gal my age 🤣😂🤪.)
As it turns out, my eyes are fine! My brain, however, is another issue 🥴🤪. It’s my brain, or rather the result of previous brain lesions and the residual effects of the gamma knife radiation treatment, that are causing my symptoms.
I guess I thought once they eliminated the brain lesions things would go back to “normal.” As I’m still learning, every treatment or phase of this disease puts me into a “new normal.” Brain metastasis is no different. The lesions followed by gamma knife radiation treatment have affected multiple areas of my body. I didn’t know there could be this many correlations, but it turns out there are. I’ll go through each of them and talk about what I learned, and what we can do about it, if anything.
The night before my appointment, I flew in from Idaho Falls, Idaho, where my Homey and our Roamy are. (We have recently started calling our Roam Home “Roamy.” ❤️)
Enterprise gave me a great deal on a rental car. I did the “mystery” car option, which saved me money, and the worker said to take my pick of any SUV in Aisle 3. I chose the Jeep Grand Cherokee. It was clean, smelled nice, and was fun to drive. It rained the whole time I was in the Houston area, so I was happy to have a more substantial vehicle.
My plane got in after dark, and I drove about 30 minutes to my hotel from the airport. I have to admit, Downtown Houston is really pretty at night!
I spent the night in a hotel near MD Anderson so I could walk or take the shuttle. Plus, I would not have to pay for parking at the hospital or deal with the morning downtown traffic. Have I told you how much I detest driving in downtown Houston traffic 😂🤪? I took the shuttle over (it was raining), but I walked back the hotel rather than waiting (there was a break in the rain).
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I was on time to my appointment. They said to plan on a three hour visit, which I did. My entire appointment took about 4.5 hours. 🙄 😳
First the tech did a bunch of eye tests to look at vision, peripheral, colorblindness, pressure and more. Similar to the annual eye doctor checks, only more in depth and slightly different tests. They also took vitals (they ALWAYS take vitals). Mine are good. 👍
Next the OD (optometrist) and PA came in to see me. He gave me his card, but I don’t have his name in front of me. He was very thorough, and didn’t seem rushed at all. They both checked my eyes, did a bunch of tests on the double vision and prism, and talked to me about why they think this is occurring. He found some slight worsening in my double vision since I saw Dr. Boeckman and got my new glasses in April. I get a new script and new glasses every year.
He was the first to tell me I had a TBI (Traumatic Brain Injury) from breast cancer lesions and gamma knife radiation treatment. This is causing my double vision, because the lesions occurred in the cerebellum which controls balance and vision. Incidentally, I had severe dizziness in 2018, which prompted the first brain MRI when we found the lesions. I continue to have mild dizzy spells, but nothing like when I had the brain mets.
The Optometrist gave me a helpful tip for dealing with vision and balance issues. Always look with your nose. E.g. point your nose at what you want to look at, and it will help your eyes to come together better. This may help with walking, especially in precarious places like hiking near a cliff or going up a staircase.
Dr. Al-Zibidi, Neuro-ophthalmologist, was last to see me. She had reviewed my history, and then she performed her own exam. She looked at my eyes, then dilated my eyes, then examined them again. She was very thorough. She’s an Associate Professor with MD Anderson, and a very good educator. She said my eyes look good!
She further expanded on what the optometrist had said. She explained how our vision works with the brain, how mine has been impacted by the brain Mets and gamma knife radiation effects.
She described how the vestibular system works, and explained some medical terms like occipital vestibular and gravity vestibular. Basically, if I understand it correctly (I’m not that kind of doctor 🥴), the vestibular system involves the connections between eyes and inner ears, and extremities and the ears, and sends messages to our brain. All of these connections are translated by the brain, in the cerebellum. That’s where I had the three brain lesions in 2018 that were treatment with gamma knife radiation in January of 2019, so my brain doesn’t always “interpret” the messages correctly that are sent by my vestibular system.
All this to say, having a history of brain lesions and radiation can cause many things that are going on with me, even years after the radiation treatment. These symptoms may sound daunting when we look at them all together, but I have been managing them well. Most are mild enough we don’t have to worry at this point. We will continue to watch in case things get suddenly worse.
I have double vision, abnormal gait, posture instability, and problems with depth perception. This results in dizziness at times as well as occasional headaches.
When I take a step, sometimes my brain does not interpret the step correctly. It “misaligns,” and tells my body the step is further away or closer than it is. For example in the airport I was having trouble walking in a straight line. People were trying to pass and they couldn’t figure out which side to pass on 😂😂. I blamed it on my suitcase which has a mind of its own. It does 🙄, but I probably could not pass a sobriety test if I got pulled over and the officer directed me to walk the line.
My steps tend to be heavier, as my body is trying to feel the gravitational pull (gravity vestibular). It’s the same concept with people who have neuropathy (which I also have). My mom had diabetic neuropathy and I could see it in her gait. Mine is from treatment. We “trudge,” because our body is putting the full foot down so the brain can interpret the level of gravity which connects to the foot. Vestibular issues can make one feel like you are “floating,” because of the miscommunication between the brain and gravity. (That’s fun 🤪 🙄). I can only explain it like I’m wearing big heavy boots for walking on the moon; I “stomp” to stay grounded. It’s not intentional, but my body walks that way. Sometimes I can intentionally walk differently, but it makes me feel uneasy. Mine is not nearly as bad as some people have it, and for that I am grateful. However, if you ever pay attention to how I walk you will probably witness the moon walk.
I tilt my head to compensate for the vertical double vision (I didn’t really know I did that, but the doctor saw me doing it). I feel a bit dizzy at times, like the room is spinning, especially when I first get up. It goes away quickly. I just have to sit a moment and move slowly. Head tilting can also cause issues with the spinal column alignment, and produces hard knots in my neck. Tim is constantly massaging my shoulders, but the tightness in my neck never really goes away. (Ooh, maybe I can get a doctor’s note to get regular massages covered by my insurance! Just thought of that. 🤩🤩)
Sometimes my brain does not interpret depth perception properly, which makes going up and down steps a bit more challenging than it used to be. I am much more cautious getting in an out of a vehicle, walking around curbs, going up/down steps, and I have actually felt paralyzed at times when a step “seems” too hard for my body to manage. This happened to me when we were hiking in Colorado, and again at the Devil’s Canyon Overlook.
If it’s a set of steps made out of rocks on a hiking path, where the steps change shapes or size from one to the next, I have to stop and let my brain figure out how to take the next step. Otherwise I feel like I will fall. My fear of heights starts kicking in and I start to panic. I have to take deep breaths and let my eyes focus on the task at hand.
I haven’t actually fallen yet, and hopefully I can continue to prevent that. I often rely on Tim and sometimes I use a walking pole to feel confident with each step when hiking in unfamiliar surroundings. Tim lends a shoulder whenever we are going up/down a regular set of stairs like in the Capitol buildings.
Even swallowing takes a bit more effort than it used to, which is apparently also connected to vestibular issues. I get hiccups more than I’ve ever had in the past (mainly while I’m eating). I had no idea all these things could be related 🤷♀️🤷♀️.
These symptoms in combination sound quite daunting, and I suppose they could be if I choose to let it be, or if my circumstance got worse. But it doesn’t currently interfere with life. It’s more of what I think of as an inconvenience. It may stop me for a momentary pause, and people may look at me sideways 😁😆, but I just keep going. I don’t let it get me down. I don’t let it prevent me from living life and challenging my body a bit.
Honestly, it’s good to finally have some answers on the “why” questions to all these little physical annoyances. All of this because of a traumatic brain injury. Who knew?
And maybe a little extra because I’m getting old. 😂 😂 🤪 🤪
The doctor said we can work on the gait and posture with PT/OT, but I’m not a fall risk so I don’t really need (or want) to do that right now. They can’t do much for the double vision except continue to put prism in the glasses. Horizontal double vision is easier because there’s a wider field to work with. But mine is vertical (left eye is higher than the right). They can only put so much prism before it becomes distorted, making everything worse (we are getting close to that point). If it gets too bad, I could wear a patch over one eye and just look through the other. Arrr 🏴☠️
Tim asked if I could get a pirate outfit to go with the patch 🤦♀️ 😂 🤪.
There are other options for future treatment, if things continue to get really bad. They can give me steroids, or if it gets really, really bad, they could do surgery. But, my vision would have to be stable for six months to get surgery, which is not likely to happen.
IF my eyes did stabilize for at least six months, surgery on the occipital nerves or muscles (not sure which) would have to be done by the pediatric surgeons at Texas Children Hospital. Yes, you read that right. Apparently pediatric surgeons are the only ones who do this type of surgery since it’s mostly kids who have this problem. I could get into that!
Tim said he always knew I was still a kid at heart 😂 🤪.
I don’t anticipate needing surgery any time soon. And neither do the doctors. They are just telling me things to look out for. Now they have my issues on record so I can be followed as needed.
The worse case scenario, if one wants to think about worse case scenarios, is if those post-radiation spots developed necrosis or edema or we had progression with more lesions. I think that would be really, really, really bad, but we don’t anticipate that happening either. Continued prayers 🙏🏻 in that vein are appreciated 🫶!
Dr. Al-Zibidi said if this problem was going to correct itself, they would have expected it to do so within 4-6 months post radiation. So that’s not likely to happen. It’s been 5 almost 6 years since I had mine, so the chance of spontaneous correction will be left up to God. We can still pray for a miracle! 🙏🏻🙏🏻
In the meantime, we will keep treating the symptoms (double vision, gait, head tilt, balance) unless there is a sudden and significant change, at which point we would start looking at other options. Dr. Al-Zibidi said she would like to see me back in 6-12 months to check their numbers and see if anything has changed, but she’s quite content for my regular optometrist to follow me, and doesn’t anticipate needing to see her on a regular basis. She complimented Dr. Boeckman, and said he is doing a good job. She’s pleased with his work (he also faxed over all my records so MD Anderson could review the history). That’s encouraging. I like going to him, and I have seen him for nearly 15 years now.
After my appointment I walked back to the hotel, picked up my car, and drove to Conroe where I stayed the night in a different hotel. A much better hotel, for less money, actually. It was raining, and my eyes were still dilated, so that was a fun drive 🥴🫤🙃. I picked up the mail, went by our storage shed, visited with my son and his family, and finished the trip with my infusion the next day before flying back to Idaho Falls.
Whew. That’s a lengthy blog. Sorry about that. But, I learned a lot, and hopefully you did too. Now I know what to look out for, and I know better how to pray. I also feel like I have answers that explain some of the things I’ve been experiencing, so it will help me to have a better handle on what my body. I feel confident that my body is just responding to history, rather than “new” cancer issues creeping up, and I believe what they shared with me to be true. This referral by my optometrist and my neurosurgeon was a good idea. I’m in good hands.
À la prochaine…hasta la próxima vez…until next time!
when we saw him yesterday. Or maybe he got it from his daughter. She tested positive a week or two before me. Who knows… According to the 